There is a definite shift in the language of health care these days … for a number of years we have been hearing words like “accountability”, “transparency”, and “collaboration”. Or you might have heard the terms “governance”, “integration”, and “evidence-based”. But there are also some new words in discussions of health care and system transformation. These include “volunteer” and “caregiver”. For those of you old enough to remember starched nurses’ caps and the Norman Rockwell Doctor’s Office series, you could be forgiven for thinking what’s so new about this?
After more than 50 years of virtually ignoring caregivers and volunteers in favour of the sophistication and complexity of acute care in hospital settings, the glory of high tech medical solutions, and the professionalization of medicine, the discourse is changing. It has become apparent that continuing down the road we are on, in the face of changing demographics (the baby boomers) and disease patterns (more chronic conditions), will be neither affordable nor effective. Entering the picture now are caregivers and volunteers. And the discussion? Well it is based on how we can better incorporate both sets of volunteers into the health care system.
The truth is … they have always been there, and for many years were acknowledged and respected. However, over the past 50 years caregivers have been ignored, and volunteers have been marginalized. And now that we are faced with insurmountable costs and an unsustainable system, we are acknowledging their contribution as a critical cog in the health care wheel and trying to figure out how we can harness their expertise, their time, their passion and their commitment.
People are living longer. People are dying at home. Hospital stays are short. Illness no longer means lengthy hospitalization – it can often mean being sick (for a long period of time) in your own home. And being looked after not by the health care system, but by your family, or your neighbours and friends. Hence, the growing focus now on supporting the caregivers; a number of jurisdictions and agencies, like St Elizabeth (www.saintelizabeth.com), and The Change Foundation (www.changefoundation.ca), have developed entire new programs designed to support the caregivers.
Ditto for volunteers. With the professionalization of health care, volunteerism (outside of the agencies themselves that truly understood their value), was treated mostly with a paternalistic pat on the head. “Good for you for doing such good things”. In one Local Health Integration Network (LHIN) that I am familiar with, agencies using a large number of volunteers continue to be rated as “high risk”, because they deliver services and without a paycheque, can’t be relied upon. What hogwash, and what a fundamental misunderstanding of the important role volunteers play in keeping people and communities healthy. But I digress.
Things are changing. A volunteer friendly visitor can help to keep a senior out of hospital and at home longer. Ditto for a supported caregiver. Family members might find themselves now changing the feeding tube for a father with ALS. Family members are learning the proper technique to turn a mother or sister dying of cancer to prevent bedsores. Volunteers from visiting hospice programs are enabling dignified death, at home. What was once the purview of the health care professionals has become the daily reality for volunteers and caregivers.
Our understanding of what keeps people healthy is changing, and the language of health system transformation is now including some new voices. But there are many questions remaining about where these new found resources (a little cynicism here) will fit and how their roles will be appropriately identified and acknowledged. A final caution, perhaps to be addressed in a future blog, is to ensure that we avoid exploiting the already stressed caregivers as a strategy for containing costs.
